get enough treatment without overtreatment

blg4
blg4 Member Posts: 31
edited May 2016 in Just Diagnosed

I was diagnosed with DCIS in one breast and LCIS in the other. The doctor is recommending a mastectomy on the DCIS side and an excisional biopsy on the LCIS side. I have read articles stating that DCIS is being overtreated. How can I know if I should go the more conservative route? The doctors I have seen so far feel the area is too large to consider more conservative treatment. I don't know if size has anything to do with it. The LCIS side is small. The DCIS size is 6 cm.

The reason it has to be a mastectomy is because my breasts are small. One surgeon suggested partial mastectomy on the right side but it would leave me deformed.

If you know of any doctors who are using a more conservative treatment in the Washington state area let me know. (Watching and waiting or giving medication vs just doing a mastectomy)

Here is an article that mentions a doctor in California who says about DCIS " "I don't think we should label it as cancer. I think we should call it a 'ductal lesion.' I think people would be much more willing to be calm about it.""

http://www.npr.org/sections/health-shots/2013/08/0...



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Comments

  • muska
    muska Member Posts: 224
    edited February 2016

    Hi blg4, you didn't mention what tests have been run so far, what other treatment(s) you were recommended or how old you are. Your DCIS is very large. I doubt they can reliably determine the size of LCIS until they do surgery because LCIS is often not seen on imaging.

    I think you were probably recommended the most conservative treatment for someone in your situation. If you are in relatively good health I would consider double mastectomy. Since I don't think imaging is reliable enough to catch progressions before they become invasive or garantee no lymph node involvement I have little trust in 'watching' protocols for someone who already has a sizeable cancer. DCIS is cancer that supposedly has not yet escaped outside the duct. Whether you call it cancer or lesion is semantics that does not change the morphology.


     

  • april485
    april485 Member Posts: 1,983
    edited February 2016

    Dr. Essermann, while a pioneer is one a very few doctors who feel that watch and wait is a good approach to DCIS. While it cannot invade breast tissue as DCIS, it is indeed malignant cells that can and often do morph into invasive cancer. It just needs one more step to accomplish this and then you will always have the chance to become metastatic.

    Even Stage 1 cancer can and does come back and can kill you. Sorry to be so blunt, but at the very least, consider some type of surgery. You do have time to take a pre surgery course of tamoxifen or an AI to see if it will shrink your "lesion" enough to have lumpectomy or you can have a LX and get your breast reconstructed if it is very deformed afterward. It is the law that insurance must cover it.

    Hugs and remember it is YOUR choice on treatment. Whatever you decide, be comfortable with it and you will never regret it. Best to you!

  • StaceySue2U
    StaceySue2U Member Posts: 83
    edited February 2016

    I was only recently diagnosed with breast cancer and I, although my cancer is more advanced than yours, I am also brand new to this and can understand how you feel at first. I didn't want to believe I really had real cancer, I wanted to believe I just had something mild. I thought I was being very aggressive when I told my Dr. I wanted bilateral mastectomies "just to make sure." I learned that even an early stage cancer is cancer and these are life or death decisions we're making. I was surprised when my doctor's attitude was "yes. Of course bilateral mastectomy is a very good decision." I then realized that my situation is serious. It's big traumatic thing to have to do but I have to say that I wish I'd caught mine while it was still DCIS and had mastectomies then instead of finding myself with multiple tumors.

  • blg4
    blg4 Member Posts: 31
    edited February 2016

    I am 52 years old.

    My test results are at the bottom of this. About the lymph node involvement.. the surgeons feel it does not matter. One said it was because I was recently biopsied. I forget what the other one said.

    I was given all the options. I did not mention is that if I did a partial mastectomy I would need radiation. Of course they offered the tissue expansion or implant for reconstruction. Also mentioned was that they could do nipple sparing. The 2nd opinion dr did not discuss doing a partial mastectomy.,, felt he would not have enough tissue to close the gap. The DCIS is on the bottom of the breast...so if it is removed then there is nothing to support the top half.

    One surgeon said I could have the other breast removed if I wanted to, for cosmetic reasons. It is not a requirement. The other dr was even less interested.. does not agree that you have to remove both. But he wants to do a biopsy of the area.

    I have fibromyalgia and have been in 2 car accidents in 3 years. I felt I needed disability before I even had the car accidents or was diagnosed with breast cancer.

    Pathology and MRI Report included:

    DIAGNOSIS:
    A. LEFT BREAST, 3:00 AXIS, STEREOTACTIC CORE BIOPSY:
    1. LOBULAR CARCINOMA IN SITU INVOLVING A RADIAL SCLEROSING LESION
    AND
    WITH ASSOCIATED CALCIFICATIONS.
    2. NEGATIVE FOR DUCTAL CARCINOMA IN SITU AND INVASIVE CARCINOMA.

    B. RIGHT BREAST, 5:00 TO 7:00 AXIS, STEREOTACTIC CORE BIOPSY:
    DUCTAL CARCINOMA IN SITU WITH THE FOLLOWING FEATURES:
    1. NUCLEAR GRADE: High grade (grade 3).
    2. ARCHITECTURAL PATTERN: Solid.
    3. NECROSIS: Focal central necrosis.
    4. CALCIFICATIONS: Associated with DCIS.
    5. INVASIVE CARCINOMA: Not identified.

    Comment: Hormone receptor studies will be performed on part B and
    reported in an addendum.

    SPECIMEN SOURCE:
    A. Left breast SBB, calcific.
    B. Right breast SBB, calcific.

    CLINICAL INFORMATION:
    Fax sheet, report, insurance, film. ICD-10 code is R92.0.

    A. Time of removal: 10:11 a.m. Time in formalin: 10:15 a.m.
    B. Time of removal: 10:55 a.m. Time in formalin: 11:00 a.m.

    Per the accompanying breast imaging report, the patient has a 2 mm
    grouping of mildly heterogeneous calcifications in the 3:00 axis of the
    left breast. Additionally, a 60 mm span of pleomorphic calcifications
    and a linear branching distribution is seen in the 5:00 to 7:00 axis of
    the right breast.

    MACROSCOPIC DESCRIPTION:
    A. SPECIMEN: Received in formalin, labeled with the patient's name,
    and "left SBB calcific."
    CASSETTE:
    NUMBER OF CORES: 7
    SIZE:
    LENGTH: Ranging from 0.9 cm to 5.2 cm
    DIAMETER: 0.3 cm average
    FREE-FLOATING CORES: None
    INK: Blue
    RADIOGRAPH: Present
    SUMMARY OF SECTIONS:
    A1-A2 Cassette cores, submitted entirely and wrapped

    B. SPECIMEN: Received in formalin, labeled with the patient's name,
    and "right SBB calcific."
    CASSETTE:
    NUMBER OF CORES: 6
    SIZE:
    LENGTH: Ranging from 0.7 cm to 4.5 cm
    DIAMETER: 0.4 cm average
    FREE-FLOATING CORES: None
    INK: Green
    RADIOGRAPH: Present
    SUMMARY OF SECTIONS:
    B1-B2 Cassette cores, submitted entirely and wrapped
    NDM/js 10/16/2015

    MICROSCOPIC DESCRIPTION:
    a-b. Three HE level sections are reviewed for each tissue block. The
    accompanying breast imaging report and specimen radiographs for both
    parts are also reviewed. The biopsy in part A has a region of sclerosis
    and associated sclerosing adenosis that appears to be involved by a
    lobular proliferation. Immunohistochemistry for e-cadherin is performed
    on block A1 with the appropriate control and is negative within the
    lobular proliferation, consistent with involvement by lobular carcinoma
    in situ. Additionally, immunohistochemistry for p63 and smooth muscle
    myosin heavy chain is performed on both blocks A1 and A2 with the
    appropriate controls in order to further evaluate for myoepithelial
    cells. Both markers demonstrate an intact myoepithelial cell layer
    within this biopsy. There is no evidence of invasive carcinoma in part
    A.

    This case has undergone prospective intradepartmental quality
    improvement review prior to verification.
    JBK/or 10/19/2015




    Joren B Keylock, MD
    Pathologist
    Electronically signed 10/20/2015


    ADDENDUM:


    IMMUNOCYTOCHEMICAL CANCER MARKER STUDIES
    MATERIALS
    BLOCK: B2
    SPECIMEN TYPE: Breast
    LOCATION: Right breast, 5:00-7:00 axis
    TUMOR TYPE: DCIS
    FIXATIVE: Formalin (10% neutral buffered)
    DURATION OF FIXATION (>6 AND <72 HOURS)+: Yes
    COLD ISCHEMIA TIME (<1 HOUR)+: Yes
    ANALYSIS SUMMARY
    ESTROGEN RECEPTOR: POSITIVE FOR ER PROTEIN EXPRESSION
    Percentage of tumor cells exhibiting nuclear staining++: 98
    Staining Intensity: Strong
    Internal Controls: Positive
    External Controls: Positive
    PROGESTERONE RECEPTOR: POSITIVE FOR PR PROTEIN EXPRESSION
    Percentage of tumor cells exhibiting nuclear staining++: 55
    Staining Intensity: Strong
    Internal Controls: Positive
    External Controls: Positive
    METHODOLOGY
    Immunohistochemistry evaluation is performed by manual
    quantitative/semiquantitative morphometric analysis.
    Immunohistochemical evaluation of estrogen receptor is performed using
    Thermo monoclonal rabbit antihuman estrogen receptor alpha clone SP1.
    Progesterone receptor evaluation is performed using Thermo monoclonal
    rabbit antihuman progesterone receptor clone SP2. Ki-67 evaluation is
    performed using DAKO monoclonal mouse antihuman Ki-67 antigen clone
    MIB-1. Her-2 neu evaluation is performed using Thermo polyclonal rabbit
    antihuman C-erbB-2 clone SP3. Unless otherwise indicated, these studies
    are performed using the Thermo automated autostainer, used with paraffin
    embedded formalin fixed sections which have undergone heat induced
    epitope retrieval in Thermo's Dewax HIER solutiuon. Thermo Ultra Vision
    Quanto Detection system HRP DAB is used for visualization.
    COMMENTS
    + Per ASCO/CAP guidelines, ideal fixation times for ER/PR and HER2 IHC
    evaluation are >6 and <72 hours; cold ischemic time should be <1 hour.
    Puget Sound Institute of Pathology HER2 validation and ongoing
    monitoring of IHC and FISH assays demonstrate an extremely high
    concordance (>95%) that is independent of the reported duration of
    fixation. However, if cold ischemic time and fixation time do not meet
    published guidelines, repeat analysis on alternative material is
    suggested if clinically indicated.
    ++ If less than 1% of tumor cells are positive for estrogen or
    progesterone receptor, the tumor is considered to be negative for the
    hormone receptor expression per ASCO-CAP 2010 guidelines.
    +++ A false negative result cannot be ruled out in the presence of
    inadequate controls.
    ++++ Negative (0) no staining observed or membrane staining that is
    incomplete and is faint and within less than or equal to 10% of the
    invasive tumor cells; Negative (1+) incomplete staining that is
    faint/barely perceptible and within > 10% of invasive tumor cells;
    Equivocal (2+) circumferential membrane staining that is incomplete or
    weak/moderate within > 10% of invasive tumor cells; Positive (3+)
    circumferential intense complete membrane staining in contiguous
    population > 10% invasive tumor cells.
    +++++ When discordance exists between cell proliferation as determined
    by Ki-67 antigen and histologic mitotic count, the higher of the two
    determinations should be used. Ki-67 antigen is sensitive to tissue
    fixation and may show a falsely low proliferation index.
    NOTE: Some of the immunocytochemistry tests used at Puget Sound
    Institute of Pathology have not been cleared or approved by the U.S.
    Food and Drug Administration. The FDA has determined that such
    clearance or approval is not necessary. These tests were developed and
    their performance characteristics determined and verified by Puget Sound
    Institute of Pathology. These tests are used for clinical purposes and
    should not be regarded as investigational or for research. Additional
    information about these tests is available upon request. This
    laboratory is regulated under the Clinical Laboratory Improvement
    Amendments of 1988 (CLIA) as qualified to perform high complexity
    testing.
    References: 1. Wolff AC, Hammond ME, Schwartz JN, et al. American
    Society of Clinical Oncology/College of American Pathologists guideline
    recommendations for human epidermal growth factor receptor 2 testing in
    breast cancer. Arch Pathol Lab Med 2007;131:18-43.

    JBK/js 10/20/2015



    Joren B Keylock, MD
    Pathologist
    Electronically signed 10/20/2015

    ----------------------------------------------------------------------------

    DATE OF SERVICE: 11-02-15

    EXAM: MRI BREAST BILATERAL
    ACCESSION: 3236863

    HISTORY: Recently diagnosed ductal carcinoma in situ of the right breast.
    Lobular carcinoma in situ and radial sclerosing lesion of the left breast.

    TECHNIQUE: Breast MRI was performed with an 8 channel coil. Sequences
    obtained included axial T2 fat sat, pre-contrast axial T1, post-contrast
    T1 every 90 seconds for three sequences and high resolution sagittal
    sequences. Subtraction axial images were
    generated. Axial 3D SPGR images were also obtained. Sagittal
    reconstructions were performed.

    9 cc of MultiHance intravenous contrast were injected without incident.

    The study was processed using a CADstream system to optimize
    interpretation by generating multiplanar and three dimensional
    reconstructions, by creating subtraction images from the dynamic pre- and
    post-contrast data and by providing enhancement kinetic
    and analytical information.

    COMPARISON STUDIES: None

    FINDINGS:
    RIGHT BREAST:
    I reviewed the patient's mammogram. There are pleomorphic calcifications
    within the lower inner aspect that span approximately 6 cm. These
    calcifications are associated with ductal carcinoma in situ. On the
    patient's MRI the susceptibility artifact
    is noted in the lower inner aspect at the site of biopsy. There is
    however no specific enhancement on the MRI. There is a large amount of
    background enhancement throughout the breast. I do not identify a mass at
    the known site of DCIS.

    There are 2 prominent intramammary lymph nodes which are suspicious for
    nodal metastasis. These are very caudal in location anterior to the right
    lobe of liver. No enlarged or abnormal appearing axillary lymph nodes.

    LEFT BREAST:
    There is mild to moderate parenchymal background enhancement. There is
    susceptibility artifact in the inferior aspect of the breast which is the
    area of known LCIS. No specific enhancement of the known lobular
    carcinoma in situ.

    Elsewhere no enhancing mass or areas of worrisome nonmasslike enhancement.
    No enlarged or abnormal appearing axillary or internal mammary chain
    lymph nodes.

    IMPRESSION:
    RIGHT BREAST:
    1. The biopsy-proven DCIS is essentially occult on MRI. Based on the
    mammogram the calcifications which are associated with DCIS span 6 cm in
    length.

    2. There are 2 abnormal appearing internal mammary chain lymph nodes.

    LEFT BREAST:
    1. Area of known LCIS is occult on MRI.

    ASSESSMENT: ACR BI-RADS Category 6 - Known biopsy proven malignancy.



    RECOMMENDATION:
    1: Appropriate treatment.


    Per National MQSA guidelines, a breast imaging result letter will be
    provided to the patient.



    Reported: 02 Nov 2015 11:24 ANDREA MANZO
    Electronically Signed: 02 Nov 2015 14:17 ANDREA MANZO

  • blg4
    blg4 Member Posts: 31
    edited February 2016

    When one of the drs was asked if something could be done to shrink the tumor first, they said no. (Responding to Tamoxifen comment)

    Yes I don't want to be too conservative at treatment and die because of it. That is one reason I am considering the dr that wants to do a full mastectomy vs the one that wants to do a partial because I think the other person may be being too conservative.

  • blg4
    blg4 Member Posts: 31
    edited February 2016

    Sorry I forgot to mention.. it is Grade 3 Stage 0.

  • blg4
    blg4 Member Posts: 31
    edited February 2016

    It is Stage 0 Grade 3

  • BarredOwl
    BarredOwl Member Posts: 261
    edited February 2016

    Hi big4:

    I do not think that the concerns regarding over-treatment of some types of DCIS apply equally to cases of extensive, high grade (grade 3) DCIS with [EDIT: central comedo necrosis, for example,] which is seen as a condition with greater risk. The popular press does not do a very good job of making that clear.

    The vast majority of patients elect treatment in accordance with the current consensus treatment guidelines, such as those from the National Comprehensive Cancer Center (NCCN) regarding Breast Cancer treatment (Professional Version 1.2016), which include surgery for DCIS.

    Surgery may also identify the presence of associated invasive disease. Current methods of surveillance are not able to reliably detect the onset of invasion (assuming it is not already present), and some small invasive cancers could have the potential for spread. Delays in treatment should be avoided if possible.

    I had a similar diagnosis, with multifocal DCIS, 5+cm, grades 2 and 3, with comedo-necrosis ([EDIT: a type of] central necrosis) in a small B breast. Both breast surgeons I consulted, including one at Mass General in Boston, recommended mastectomy.

    Unfortunately, I was one of the approximately 20% of DCIS diagnoses that upon surgery are found to have associated invasive disease (1.5 mm IDC and some micro-invasion). Thus, I was upgraded to Stage IA, based on surgical pathology.

    BarredOwl

  • BarredOwl
    BarredOwl Member Posts: 261
    edited February 2016

    Hi Kayb:

    I believe that "comedo necrosis" is a type of "central necrosis".

    "Focal central necrosis" as noted in big4's report also appears to be a type of central necrosis, but it may be distinct from "comedo necrosis" by being lesser in degree (focal in nature).

    3. NECROSIS: Focal central necrosis.

    One publication (2004) states (emphasis added by me):

    http://jnci.oxfordjournals.org/content/96/12/906.f...

    "DCIS is generally categorized by architectural description into five groups: comedo (layer of neoplastic cells surrounding a central area of necrosis), cribriform (radially oriented neoplastic cells forming glandular lumina), papillary (large papillations with fibrovascular stalks), solid (ductal filling with neoplastic cells), and micropapillary (fingerlike papillary projections into dilated ductal spaces). However, these groups do not take into account important prognostic features such as nuclear grade (high, intermediate, or low), necrosis (presence or absence), and polarization (architectural differentiation)."

    The article discusses different classification systems, some of which include the presence of necrosis as a less favorable criterion.

    I would still be of the view that this is an extent and grade of DCIS and with pathologic features that support surgical treatment.

    All information above should be confirmed with with a professional.

    BarredOwl

    [Edit:

    This article indicates that where watchful waiting is used, including by Dr. Esserman, it is with low grade DCIS:

    http://www.chicagotribune.com/lifestyles/health/br...

    "I give people with low-grade DCIS the option of chemoprevention or monitoring," said Dr. Laura Esserman, director of the breast care center at the University of California-San Francisco."

    "Dr. Shelley Hwang, chief of breast surgery at Duke Cancer Institute in Durham, N.C., said she also sees DCIS patients who would rather watch it than treat it. But she noted that doctors don't yet have conclusive proof that certain types of DCIS can safely go untreated.']

  • blg4
    blg4 Member Posts: 31
    edited February 2016

    The dr didn't explain it that way to me... that it was at a great risk of becoming invasive cancer. He was just focused on the size.To me bigger size does not automatically mean bigger risk.. it's probably not been tested (how size affects risk). But you guys are saying that other stuff in the report is showing it is at greater risk of becoming cancer than other DCIS lesions might be. No dr discussed that with me... that's pretty bad. He did say it could already be invasive but we won't know it until it is removed.

    My Mom had a lump years ago, When it was biopsied no cancer was found. Her surgeon said he wanted to remove it anyway. Cancer was found. She had to have radiation. She said the radiation did not bother her. She is cancer free now.

  • blg4
    blg4 Member Posts: 31
    edited February 2016

    Thanks for pointing out the "low grade" comment.. I didn't want to plan to go to California if a reading of my records could say immediately that I wouldn't be considered for that method of treatment

    This is helping me a lot thanks everyone

  • BarredOwl
    BarredOwl Member Posts: 261
    edited February 2016

    Hi big4:

    FYI, as the press articles are not the best source, a number of members here have contacted Dr. Esserman (at UCSF) directly and she responded to them, including at least one by e-mail.

    Regarding size and grade, see Column 2, paragraph 2 of this editorial authored by Dr. Esserman. I recall the article was about 2 pages, but you can preview the first page:

    http://oncology.jamanetwork.com/article.aspx?artic...

    Please confirm all information provided above with your doctors, to ensure current, case-specific expert professional advice on these questions.

    BarredOwl

  • blg4
    blg4 Member Posts: 31
    edited February 2016

    This is the definition I found of focal necrosis (focal CENTRAL necrosis doesn't come up) It doesn't say anything here about it being more likely to become invasive.. but I don't think that is the purpose of this definition, it's just saying what it consists of


    Definitions:
    1. occurrence of numerous, relatively small or tiny, fairly well-circumscribed, usually spheroidal portions of tissue that manifest coagulative, caseous, or gummatous necrosis and are characteristically associated with agents that are hematogenously disseminated; frequently observed only in histologic sections, but the foci may be as large as 1–3 mm and macroscopically visible; arbitrarily, foci larger than that are usually not termed focal necrosis.

  • blg4
    blg4 Member Posts: 31
    edited February 2016

    I just sent an email to Dr Esserman.

  • blg4
    blg4 Member Posts: 31
    edited February 2016

    She responded to me. The surgeon she mentioned to see is my surgeon! She said to ask if endocrine risk reduction would be appropriate for me. I have not heard of that before... or maybe I just know it from another name.

  • blg4
    blg4 Member Posts: 31
    edited February 2016

    More responses from her...

    "You can send an oncotype DCIS and if low or intermediate risk, you can think about hormonal therapy first to see how it goes"

    Also mentioned an aromatase inhibitor but said it might not be appropriate for me.

    I don't think she read the report I posted above because she seems to not know info that is in the report

  • BarredOwl
    BarredOwl Member Posts: 261
    edited February 2016

    Hi kayb:

    Sorry, I did not mean to equate "Focal central necrosis" with "comedo necrosis." I meant only to note the commonality of the presence of some central necrosis.

    The use of the word "focal" may imply a lesser degree of necrosis than "comedo", the latter which may in some usages indicate a clear "layer of neoplastic cells surrounding a central area of necrosis."

    The 2004 article I linked above and the careful definitions set forth in the 2009 article you linked seem to show that different pathologists may follow somewhat different nomenclature conventions.

    The 2004 article seems to suggest that in some usages, "solid" and "comedo" are distinct categories (at least in some classification systems):

    "DCIS is generally categorized by architectural description into five groups: comedo (layer of neoplastic cells surrounding a central area of necrosis), cribriform (radially oriented neoplastic cells forming glandular lumina), papillary (large papillations with fibrovascular stalks), solid (ductal filling with neoplastic cells), and micropapillary (fingerlike papillary projections into dilated ductal spaces).

    In contrast, by my layperson's read, the 2009 article defines the term "solid" as a generic term or umbrella category, which may encompass different degrees of necrosis, one of which is comedo-pattern.

    Unless otherwise specified, the term "solid pattern" is used herein as a generic descriptor for an intraductal epithelial proliferation that fills the duct and which lacks micropapillary and cribriform areas, irrespective of its other features. As such, it encompasses the lesions that have traditionally being referred to as displaying the "comedo-pattern DCIS" or "comedo-DCIS". Comedo-pattern DCIS was defined as solid pattern DCIS with central necrosis and grade 3/3 atypia . . "

    In view of the above, and because it may influence understanding of risk, it would be best to consult the pathologist who issued the report and/or surgeon regarding their usage, and the clinical implications (if any) of the noted "solid" architechtural pattern, with presence of focal central necrosis, and high nuclear grade (grade 3).

    BarredOwl


  • JuniperCat
    JuniperCat Member Posts: 392
    edited March 2016

    Hello! I'm not sure if this helps or muddies the waters but this is what appeared in my pathology report for DCIS:

    "DCIS: Present, solid architecture, Nuclear grade 3
    Central necrosis: Present, focal, Extent of DCIS: multifocal"

  • JuniperCat
    JuniperCat Member Posts: 392
    edited March 2016

    I just saw this on the internet though I haven't looked at it carefully...

    http://www.thedoctorsdoctor.com/diseases/dcis.htm

  • blg4
    blg4 Member Posts: 31
    edited February 2016

    I am wondering does it even matter if you guys have the definitions of the terms correctly identified. They are saying it is grade 3, a large area etc... whether or not that it really will become invasive in the future cant be predicted yet until more studies are completed. Also since I have two different things in each breast the dr says it shows my breasts are "good at making stuff".

    Does anyone know if these things that Dr Esserman brought up are done before surgery or after? (She has not seen me in person so her comments are affected by that...)

    endocrine risk reduction

    oncotype DCIS

    aromatase inhibitor



  • debiann
    debiann Member Posts: 447
    edited February 2016

    Sometimes there can be some IDC, an invasive cancer, mixed in with the DCIS. Just because the area biopsied said DCIS, you won't know for sure till the entire tumor is removed and checked. If the area in question is large and your breast is small, then an mx is the best option.

  • blg4
    blg4 Member Posts: 31
    edited February 2016

    It is perfectly ok with me if you guys want to discuss the nuts and bolts of everything.. I am interested in it too. I am just in the mode of having to decide what my next actions need. I was clarifying it for myself.

    I was called back.. the nurse who called didn't know what endocrine risk reduction was.. Said the other stuff would be after my pathology on the removed tissue. The oncologist would decide.

    I set my surgery date.. Feb 24 I am supposed to have dye put in the sentinel node (or whatever the right terms are). Then the next day have a wire placed and surgery the same day.

    It was very hard for me to decide what to do because anything had tremendous drawbacks attached to it. Obviously I would want to keep my breast if I could. But with it being such a big area, and studies not completed on who can go without mastectomy it is better to err on the side of caution. (Also I have a strong family history of cancer.) I was not sure if I should do the reconstruction or not. Yes you can do it at a later time but then you won't be able to have nipple sparing. I was afraid of the problems reconstruction might bring. would it make me less functional because the muscle could be damaged or the tissue might not get enough blood supply etc. If I did implants they have been known to leak, cause cancer, etc. Newer ones are out there but too new to know the dangers. Also the breast surgeon (not the plastic surgeon) said that implants would not be good for me because of the shape of my breasts. (Thanks a lot, plastic surgeons for not telling me that.)

    Thank you everyone for your help! Continue to discuss whatever you want it is ok with me

  • blg4
    blg4 Member Posts: 31
    edited February 2016

    yes the area is large and my breast is small.

    Forgot to list above yes one reason to do the mx is because there could easily be invasive disease that is not known about unless they can take more samples.

  • blg4
    blg4 Member Posts: 31
    edited February 2016

    I believe I am going through menopause but have not had it confirmed by a test or anything.

  • BlueHeron
    BlueHeron Member Posts: 18
    edited February 2016

    So, if you are having wire localization, that means you are having lumpectomy (not mastectomy), I just was not sure about your last post re which surgery you have chosen.

    Keep in mind that if you do ever go to mastectomy, choosing to forgo reconstruction and just be flat on that side is an option too, lots do it.

    Regarding the sentinel node injection, if they are doing it the day before surgery, they are probably doing the radioactive tracer injection. I had that done, and then during surgery the blue dye was also injected so the surgeon had two ways to find the sentinel lymph nodes (the first ones the breast drains to). The tracer is injected in several small injections into the breast, then a few hours later they do a scan and look for tracer uptake.

    Just one more thing.... I had a small invasive tumor, and plenty of low to intermediate grade DCIS on final pathology. My DCIS was not even high grade, but clearly morphed invasive.

  • BarredOwl
    BarredOwl Member Posts: 261
    edited February 2016

    Hi big4:

    I am glad you have come to a decision and scheduled your surgery. You have a second opinion that supports the surgical option. Factors such as ~ 6 cm of DCIS that is high grade and that is largely occult (invisible) by MRI (an important monitoring tool) support this approach.

    If I understand it, you will be having a right mastectomy with right sentinel node biopsy. As part of the sentinel node biopsy procedure, various techniques are used to "map" or find the sentinel node(s). Blue dye and/or a tracer will be injected into the right breast, and flow through lymph channels out of the breast to "tag" the sentinel node(s), corresponding to either the first or the first few axillary (underarm) lymph nodes that drain lymph from the breast. There can be more than one sentinel node, depending on your personal anatomy. In general, one to about three nodes detected by blue dye and/or tracer are removed. I had one on the left and four on the right.

    In addition, in connection with a left excisional biopsy for LCIS, "wire-guided localization" will be used to pinpoint the location of the non-palpable LCIS. The LCIS location will probably be located by mammography and then physically marked using wires to guide the surgeon during the excisional biopsy.

    While various documents identify DCIS lesions ≥ 5 cm, high grade lesions or palpable lesions as risk factors for invasion, these are just risk factors. Invasion may be found without such factors present, and no invasion may be found despite the presence of one or more of these factors. According to ASCO, with DCIS diagnosed by minimal invasive biopsy, invasive cancer is "reported in 10% to 20% of cases overall, approximately half of which are limited to microinvasive cancer" (very small).

    I will be hoping your surgical pathology shows pure DCIS.

    You may like to join the February 2016 Surgeries group here:

    https://community.breastcancer.org/forum/91/topics...

    BarredOwl

  • BlueHeron
    BlueHeron Member Posts: 18
    edited February 2016

    Oh, BarredOwl, thanks for making that so clear, like you ALWAYS do so amazingly well! You are a true gift to this community.

  • blg4
    blg4 Member Posts: 31
    edited February 2016

    Yes thanks for spelling it out in detail BarredOwl. I will check out that forum. One question is why do they need to use a wire when they already have the clip put in from the first biopsy? I thought that was the point of the clips.. so someone in the future could see where the biopsy was removed from

    BlueHeron yes it is confusing... I am assuming not a lot of people have both breasts with something needing to be done to each one at the same time.


  • BarredOwl
    BarredOwl Member Posts: 261
    edited February 2016

    Hi big4:

    They can't do a mammogram on you in the surgical suite to see where the marker is while you are under anesthesia and lying down. Before surgery, the radiologist will use mammography to find the marker, and place wires that are physical "breadcrumbs" that the surgeon can follow to find and remove the desired area once you are in surgery.

    I had this done for an excisional biopsy. The mammogram was in a seated position. The radiologist took some images, placed the wires, took a few more images,and then I was moved to pre-op (to wait quietly with two wires sticking out of me), and on to surgery. The radiologist and nurses were very nice and took good care of me

    BarredOwl

  • blg4
    blg4 Member Posts: 31
    edited February 2016

    Dr Esserman responded back. She said the things she listed should be done before the surgery.